Derek
This is a personal story shared
by a man who has Galactosemia.
I
am a 26 year old classic Galactosemic. I
was born in Maryland, in a time when much was not known about this genetic
disorder. After I was sent home
from the hospital, my parents noticed my eyes looking abnormal. They
took me back to the hospital where the condition got worse.
I started to throw up the milk that the nurses were feeding me. It got
the the point that I was expelling blood. As a precaution, the medical staff
took me off milk and started feeding me soy formula.
After
the diagnosis was made and modifying my diet, my health became normal.
Now I lead a normal life with no problems. I believe today Maryland has
testing for Galactosemia as well as 7 other disorders.
This is very important to do because of the severity of the disorder.
Most people, and even most doctors that I have seen as an adult,
do not know what the disorder is.
If
newborns are not screened, the newborns will run into the same problems that I
did as a newborn. And in many cases, some babies will go through even worse
problems. If the medical community
has the tools to check newborns, it should be done. It will only help newborns that have this disorder, it will
not hurt them.
Sincerely,
Derek Simmons
Written March 2002 by Derek Simmons
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